I didn’t get the memo…

As I prepared to leave the clinical trial, I figured It may take me a while to get caught up on things on the home front, SO,, I have set the dates for publishing the next few “FINDS” that I thought were insightful, interesting or educational. I felt I should explain that I do not spend ALL my time researching. 🙂

FROM ‘Parkinson’s News Today”

“, people don’t usually pick up on my symptoms in everyday circumstances. I’m an advocate for exercise as medicine. I work out regularly and feel that it has helped me to delay progression of my disease.”

“So, what should I do if I find myself in the awkward scenario of running into someone who hasn’t seen me recently? Should I quickly duck down the dog food aisle (although let’s face it, nothing is quick anymore), or endure the next few uncomfortable minutes?”

“Inevitably, the ducking idea fails, and the obligatory conversation begins. How it plays out produces mixed reactions, but primarily a bewildered look of “What?”

It goes something like this:

Unfortunate person who ran into the woman with Parkinson’s: “So, how are you feeling?”

Me: (on the inside: “A rhetorical question, right? You don’t want a truthful answer.”) Aloud, I say, “I’m doing well, thank you for asking.”

Unfortunate person: “Well, you look great.”

At this point, 26 years (or in my case 51 years) of wedded bliss to my husband and having raised three sons (or in my case ten children) who all embrace sarcasm begin to show. I save the following witty response for those who know me well enough not to be offended.

Me: (grinning) “Well, I did not get the memo that a Parkinson’s diagnosis meant that I was supposed to look bad, so thank you.”

Then comes the “What?” look, swiftly followed by a laugh, and the elephant in the room isn’t so big anymore.

We managed to find humor in the chat, which lightened the mood. Everyone felt better. After all, I could have answered, “My meds are wearing off, my symptoms are in high gear, and I feel horrible.” That would not be very nice, so I stuck to the lighter side of things.

“The bottom line is that we cannot duck down an aisle or cross the street to avoid conversations just because people don’t know what to say to us. It is not due to a lack of concern on their part, but rather a dearth of knowledge.”

“Find opportunities to educate and inform others about Parkinson’s. If you can manage to do that with a little bit of humor, that’s a bonus for everyone.”

*** Since preparing this post, I saw an excellent follow up article …What NOT to say. I’m going to schedule it for today, also… 🙂

 

Involving my neighbors

I am fortunate to live in a community where neighbors actually know HOW to be good neighbors. We do not all attend the same church, but we all believe in the same God. My neighbors share the fruits of the harvest… and another shares his garage and tools, enabling my sweetheart to repair the brakes on another’s car out of the hot Florida sun and the afternoon rain storms. Our neighbors “have our backs”.

While we have been away from home during this past month (for the Parkinson’s clinical trial)… we felt comfortable knowing our neighbors and friends would provide care for our pets, and having been given access to our home, in our absence, some even opted to paint some of our walls, in a very professional manner… (asking permission first, of course.) 🙂

We have the absolute best HOA in the world. They ask for (an optional yearly fee of $35.) Some of the things I am aware of: They hold fund raisers, collect recyclables, loan tables, award scholarships to High school Seniors and have a monthly newsletter. We have not attended their meetings, because they are at the same time as our commitment for Temple service in Orlando. Despite our lack of participation, we continue to feel accepted and included.

When an outside evil crept in, breaking into cars, neighbors called to check on each other. And for the safety of all, they worked to have broken street lights repaired.

This week, I was invited to join with other women in our community for their Tuesday swim. They rotate, gathering at various pools each Tuesday. I needed to decline, 😦 because Tuesday happens to be the other day of the week John & I are regularly gone between 10 am and 6:30 pm.

BUT.. yesterday… I thought … perhaps we could find some of our neighbors who might be interested in meeting regularly on another day of the week to attend a Qigong class if I volunteered to lead it.

I tried Yoga, but I found the poses were to harsh for me. But this works for me. Take a look. AND try it.

Tai Chi Qigong Shibashi Set 1 – This qigong is one of the most popular in the world and is designed to balance qi flow. It is an effective and easy-to-learn routine which synchronizes gentle movements with deep breathing.

Do you think I will get any takers? The link below is a 24 minute routine I enjoy doing. The recommendation is to only learn three motions on the first time… and adding on three more in your next session. At that rate, it would require 6 sessions to learn the entire routine.

My Favorite Qigong so far

Nearing its conclusion

I was scheduled to have my end of clinical trial Spinal Tap tomorrow, but since the doctor they take us to had them reschedule… I had mine a day early! The return ride ‘home’ i.e. back to Deland could have been responsible for giving me a headache, if one had developed. Gratefully, I was spared. But I have been hypersensitive to odors the last few days, and I held my sweater over my nose, the entire ride, because the perfume or car freshener seemed so offensive … assaulting my nostrils.

But YEA ! The Doctor learned from the last time and today, the Spinal Tap procedure was smoother and speedier…(I only jumped three times.) And it is done! Tomorrow, I’ll have a full day of blood tests, EKG and vital signs and the last dosing of the trial medication. Thursday is called my free day. They just hold us for observation. Friday, after vital signs and breakfast… we should be heading home. 🙂

One of the medics brought in a Wii for us to use for exercising. I am currently the champ. Last game I bowled 199. Far cry from real life. When I tried with the grandchildren a year ago… I think my final score was something like 38! I definitely needed the bumper rails up, to keep out of the gutter.

In anticipation of having other things needing my attention when we return home, I have been typing some posts, scheduling them to come out later in the month. When you go to the index, you see some topics that as yet have not been linked to a post. I am going to focus on addressing those topics. If you have a question or suggestion about something you’d like to see research on, please let me know.

Sabotaging

I shared the YouTube video, with a fellow participant in the clinical trial, where a lady cheerfully proclaims she has her life back after faithfully doing Qigong for three hours a day. She indicates the decision to put in the time was a no brainer. Should she choose to remain on the couch for twenty hours a day, taking two medications and knowing the progressive degeneration would continue… Or, commit to three hours of each day, with hope.

My friend seemed interested when we viewed the YouTube interview where she proclaimed her success. But I was saddened with my friends attitude yesterday. He feared her claims must be generated out of some other motive… and were just that. unfounded claims. Said he: “She offered no evidence to substantiate her claims. How are we to know if she really was previously on medication? Or that she was previously so impaired as she stated?” Challenging her creditability, he continued. “I’m not buying it.”

I, frankly, was bothered by his attitude. Although he has personally experienced a reversal of numerous symptoms during this clinical trial, he strives to be realistic in his expectations for his future. In less than a week, he will no longer have access to the trial medication. With the FDA guidelines, and requirements… “It will be too late” for him,…once it is made available to the public. So, my friend prepares for the worst. He expects his symptoms to return and for the disease to continue to progress, depriving him of his mobility. Thus, it has been arranged. A chair lift has been ordered, to be installed in his home this next week, in anticipation of a return to his former (pre-trial self) and a downward spiral.

This morning, I challenged his thinking. Rather than question [FEAR] her motives or success, why not give it a try? Document your current status, and experiment on the process for yourself. What do you have to lose?

My friend nodded and indicated he might reconsider and give it a try. Thinking of his self sabotaging gave me cause to include a quote I saved: [blame it on my Parkinson’s] I failed to document who to give credit to.

“A fear is really just an erroneous belief. If we didn’t believe something to be true, we would have no fear. If we didn’t believe the lion was about to devour us, we wouldn’t be afraid. If we didn’t believe that failure was bad, even humiliating, we likely wouldn’t be afraid of failure. Sometimes, we are aware of our fears and we may even understand why we are afraid. But quite often, we are completely unaware of them or how they are sabotaging our best intentions.”

Evolving

My blog is bound to evolve. Today, I changed the front page.

The link ‘My Favorite Exercises’ is now ‘Jackpot of Exercises’

I wanted to have the Qigong YouTube training, in a place anyone could access easily. Then, I thought, perhaps I could share my find with others not choosing to follow my blog by sharing the url in a text.

Funny thing happened. of all the things I had on my post, this is the picture it picked up… neglecting to include the words preceding…

DON’T FALL FOR THIS: